Umbrellas & Butt Wipes

Here's the current lay of the land:

• Fistula repair definitively failed; another surgery needed.
• Must choose between a muscle graft (MAJOR surgery) and a permanent ileo (major surgery).
• Being sent to an IBD surgical specialist for his opinion on which procedure would be better; referral letter was lost (grrrrr!!!!!!) so appointment isn't until April 15.
• Which means surgery won't be until May. With, depending upon the procedure, a 3 to 12 month recovery period.
• And we're moving in July.
• In the meantime, the fistula is acting up more than it has in about a year, causing much discomfort, some pain, and a blasted evil yeast infection. (@#$!@%)
• The stoma is now tipped flush with my abdominal wall, which means I resemble raw hamburger where it empties. If the surgery isn't until May, I will need a surgical stoma revision in the next few weeks.
• Abdominal & stoma pain have been plaguing me for a week; the symptoms are beginning to look like adhesions... Which also require a surgical fix.

So yesterday was one of "those" days. Tears, frustration, hopelessness. I sent a whiny missive to a friend who also fights with a chronic illness and used a particularly colourful phrase to describe what I felt like I was dealing with. She responded by saying, "I'll bring the umbrella and butt wipes."

I prefer unscented flushables, but chamomile or aloe will also work!

This, my friends, is what is needed on "those" days: a friend who doesn't roll their eyes, get grossed out, tell you to "just deal with it", or smile tightly. Instead, what is needed is someone with a bit of sass, who understands, is empathetic, but doesn't let you wallow in self-pity either. It's a gift, this ability. And these friends are a HUGE blessing.

Today I feel much better, physically and mentally. Here's what I'm doing to continue to fight:

• Writing this.
• Doing laundry (love the fresh smell).
• Making garlic knots. Because I want to.
• Sitting in the sun at some point for 10-15 minutes.
• Plowing ahead with some things I need/want to get done around the house.
• Counting each little bit I get done as a success.
• Writing a letter to a friend who really needs a pick-me-up.
• Praying for those who are in so much more need than me.
• Goofing around with Boo & Little Toot.
• Right now, after I post this, I think I might have another cup of tea and a scone.

And maybe, just maybe, I won't need the umbrella today. (I always need the butt wipes!)

Healing, Part Two (In 55 Easy Steps)

On October 31st I had a fistula repair performed. In the bad news category, it was my third attempted fistula repair. In the good news category, it turned out to be a new fistula, which means the two repairs on my original fistula worked. In the bad news category, this means I have a new fistula. In the further bad news category, the fistula drainage didn't stop enough to allow proper healing to the repair site, so on November 22nd I had another temporary stoma (my fourth) installed. In the good news category, the surgery went very well and there were no adhesions involved, so the surgeon is extremely hopeful about the outcome.

Refer to #31 and see how many you can identify.

Life is full of poop. Sometimes it's more, sometimes it's less, but the fact is that all of us have to deal with a certain level of both metaphorical and literal poop. And the sooner we learn to do that without whining or running away or collapsing, the better off we are.

I apologize in advance for any unpleasant imagery this post puts in your head. On the other hand, hey, you're here under your own volition! Gross or not, this is my reality. And if your sense of humour is slightly twisted, it is kind of funny...  Afterwards. So, for those of you silly bored reckless brave enough to continue, I offer you:

How to Change a Stoma Appliance in 55 Easy Steps

1. Wake up repeatedly during the night and check the base of the stoma bag to make sure it is still securely fastened to your skin.
2. Finally fall asleep soundly around 4:30.
3. Awake with a start at 7:05 to find that yes, you have sprung a leak.
4. Cuss.
5. Get out of bed. As you are still only 10 days post-op and cannot sit up normally, this involves rolling onto your right side, causing more leakage, and pushing yourself up to a sitting position.
6. Bite your lip and sigh. Pledge that you will not cuss your way through this entire procedure.
7. Stand up. Check bedding and execute small happy dance at the knowledge that you caught the leak before it soaked through all the bedding & the waterproof pad you now sleep on, which means you do not have to strip the bed at this immediate moment.
8. Realize that your little happy dance caused the stoma to become active. ("Become active" is a euphemism for "spew poop".)
9. Cuss as you grab a pile of compresses to cover the leak. Grab robe.
10. Run (well, okay, shuffle-jog) to the bathroom.
11. Empty the clean laundry out of the washing machine. Take off your pajamas, one-handed (remember the other is holding bandages to the leak), and throw them straight into the washing machine.
12. Sit on toilet. Empty stoma bag into toilet. Ask yourself again why you ate so many green onions at supper the day before??!? Gingerly peel the wax base of the stoma appliance off your skin and stitches/steri-strips.
13. Cover stoma with toilet paper to prevent further leakage incidents. Throw everything in the garbage can. Make mental note that garbage must be emptied ASAP.
14. Hop in shower.
15. Begin washing.
16. Begin relaxing in the warm water.
17. Watch in amazement as your stoma becomes active (see #8 above) and does a very admirable imitation of a sprinkler head. Specifically, the impact rotor type.
18. Cuss.
19. Wash shower walls and tub.
20. Finish showering.
21. Dry off.
22. Grab toilet paper to cover stoma 2 seconds too late.
23. Grumble and moan, remembering previous pledge not to cuss through the entire exercise.
24. Clean up. Place bathmat in washing machine.
25. Throw on robe.
26. Debate where to put on new appliance. In bathroom? Feel too weak to stand for another possible 20 minutes and rule out lying on cold floor. In your bedroom? Not ideal, as DH is still sleeping and you'd rather not wake him up for a variety of reasons, including embarrassment/frustration about the leak.
27. Peek out bathroom door, spy that Little Toot is up and her bed is free. Score!
28. Shuffle to bedroom, holding TP on stoma and robe (more or less) secure with one hand. Gather up as many supplies as can in the other. Shuffle to Little Toot's bedroom and dump supplies.
29. Repeat.
30. Repeat.
31. Lay out supplies on bed: two towels covering bed, compresses, adhesive-remover wipes, stoma appliance base, appliance paste, stoma powder, medical scissors, half-moon plasters, stoma appliance bag, small medical waste bag, and hairdryer all within reach.
32. Feel around blindly under Little Toot's bed for the extension cord you know is there. Wonder what else is under there. Make mental note to have Little Toot clean out from under her bed ASAP.
33. Find power strip, plug in hairdryer.
34. Lie down.
35. Using medical scissors, cut a 30-mm hole in the wax stoma appliance base and place base under your bum to warm up and become more pliable. Wonder who first used this technique.
36. Wipe stoma area down using adhesive-remover wipes. Wonder why they are made so thin. Discard used wipes.
37. Slowly dry stitches/steri-strips and stoma area with hairdryer on low setting. Wonder how many of your friends and acquaintances are going to blow-dry their abdomens today.
38. Grab compresses to mop up small squirt. Re-blow-dry area. Proactively place pile of compresses on top of stoma.
39. Congratulate self for not cussing over squirt incident. Make mental note to add squirted-upon robe to the load in the washing machine.
40. Grope around and find stoma powder; sprinkle a liberal layer around base of stoma; wipe off excess. Discard used compresses.
41. Pray fervently for no more activity from the $%#@! stoma.
42. Retrieve appliance base. Apply stoma paste around edge of hold in the middle.
43. Begin to peel off the base backing so base can be placed on skin; realize that you have applied the paste to the wrong side of the hole.
44. Cuss.
45. Clean off base as best you can. Apply paste to the proper side. Discard used compresses. Apply base to skin, fitting base hole snuggly around stoma. Wonder who spends their time designing stoma appliances.
46. Find stoma appliance bag; snap securely to base and press ring to make sure the seal is tight.
47. Place hand over stoma/bag/base to continue keeping the area warm and ensure flexible and strong adhesion.
48. Check clock. Note time is 8:18. Relax back on pillows, glad to have the process mostly done. Still time to eat and brush teeth before the home care nurse arrives at 9:00.
49. Decide that maybe the 10 minutes of lying quietly and heating the stoma appliance with your hand could be used for some prayer and reflection.
50. Hear the doorbell ring and Bubba bark at 8:20. Listen frantically as Boo answers the door; stink, the nurse is here 40 minutes early!
51. Cuss. But only a little.
52. Spend 10 minutes with the nurse, who inspects the change job closely. Try not to breathe in her face (see #48).
53. Express gratitude as the nurse helps apply the half-moon plaster, which you had forgotten about. Wonder how many people had to deal with improper base placement over stitches before they were invented.
54. Bid adieu to the nurse, get up, get dressed, clean up supplies. Empty garbage in bathroom. Toss robe in laundry and start load. Cook & eat breakfast. Deliberate upon an appropriate penance for the all the cussing. Con Resident Domestic Goddess (aka Mom) into changing and laundering sheets after DH gets up.
55. Begin obsessively checking for leaks every hour on the hour....

The hard work of healing is not for the faint of heart. Or for those lacking a Junior High level sense of humour.

"becoming active"

Your turn: what physical or metaphorical steps do you need to take to slog through the poop in your life at the moment?

The Things Come to Town

If you haven't ever checked out Ironic Mom, you really should go do that now.  It's one of my daily regulars, a site that helps keep me sane by assuring me that I'm not the only one living La Vida Loca.  (Try starting with two of my favourite posts: the one about stripper Barbie and the one about being sexy.)  Recently Ironic Mom's little Things (the alter egos of her twins, William/Thing 1 & Vivian/Thing 2) stopped by as part of their whirlwind world tour, and we treated them to some typical aspects of life here in the Netherlands.  Hopefully we didn't traumatize them too much, but I wouldn't bet on it...

The Things arrived the evening before my scheduled stoma reversal, so they were tucked into bed early to rest up for the big op the next day.  Next morning they accompanied me to the hospital and were ushered into the spacious 4-bed room I would be sharing with various and sundry noises and smells people. They were thrilled with the view out the window, especially catching a glimpse of Fort SintPieter, which I assured them we could visit after the ordeal was over.

We then unpacked, loading up the bedside table with post-op essentials such as lip balm, tissues, good books, and trashy magazines.  The Things happily settled into the bed, much agog with my stories of tea served in real china, staff people who tend the gift bouquets brought in, and proper duvets to sleep under.

They were less than thrilled, however, when the nurse came with the gown to change into as they realized that my warning "if the Dutch are comfortable with nudity in the situation they think you are as well" was all too true.  They quickly devised a scheme to retain their modesty:

The amount of laughter and ribald comments which greeted them soon changed their minds.  They decided "when in the Netherlands, do as the Dutch" was a good policy, combined with a bit of "see no evil":

After this happy compromise we settled down to wait.  And wait.  And wait.  When the transport came to take me down, they blew kisses and wished me well, looking forward to some uninterrupted channel surfing.  When I was brought back up not too much later in a considerably foul mood they were irritated along with me that the op had been bumped.  We threw our stuff into our bag, went home, and drowned our sorrows in chocolate.

Next day we headed over to the dog park at Sint Pieter's.  The Things were a bit worried by the chill wind and the signs of rain in the sky and asked to stay in the car.  We had to be very strict and Dutch with them, saying, "Jullie zijn niet van zuiker gemaakt!"  (You are not made of sugar!)

At first they hitched a ride along with Boo.

But after a bit, seeing how much fun everyone was having running around, they chose to ride along with Bubba.

They had a grand old time, and got to see Fort SintPieter (relatively modern at 1701) up close and personal along with Boo, Bubba, and F.

Our next big outing was to Efteling, the Dutch amusement park which inspired Disney Land.  The Things happily trucked along with Boo and Little Toot, oohing and ahhing at all the rides.

We hoped a fast ride on the wooden roller coaster Joris en de Draak ("Joris and the Dragon") would fluff out their hair but, alas and alack, it didn't.  It was a lot of fun anyway!

They greatly enjoyed wandering the beautifully landscaped grounds; what could be more Dutch than tulips and windmills?

All the walking and screaming on rides gave the Things quite an appetite, so we stopped off for a snack of fritjes (french fries) before leaving.

Thing 2 preferred the curry ketchup, but Thing 1 was partial to the mayonaise (pronounced mah-o-naze-uh).

A few days later was Queen's Day, a nationwide party in honor of Queen Beatrix.  The Things jumped right into the spirit, cross-dressing up (always guaranteeing a laugh in the Netherlands) in orange for the big party in downtown Maastricht.

Like all good Dutch citizens, we bicycled downtown.

We joined right into the throngs of people laughing, dancing, selling things, performing, chatting.  The Things' favourite was the drum band.

We were also able to share the spectacular view of the Maas, with stunning new pedestrian bridge and the older drawbridge in the background:

The Helpoort ("Hell Gate", 13th century), the oldest city gate in the Netherlands, was a big hit as well:

All this Dutch-ness was fun, but a bit overwhelming.  The Things began to feel homesick, so that evening we gave them our latest copy of Our Canada to read and played some Tragically Hip for them to listen to:

The next adventure was my operation, which miraculously took place as scheduled this time around.  The Things were very comforting in their post-op sympathy, joining me with bandages, tea, and warm compresses:

On their last full day with us the weather was gorgeous so we decided to go on a nice country wandeling (walk).  We went to the top of one of the local plateaus (this is the southern Netherlands!) to check out the wildflowers in bloom.

The Things recognized Queen Anne's Lace from back in Canada right away and had a little frolic in the Forget-Me-Nots as well:

Check out that amazing blue!  (Oh, and the flowers are also pretty...)  Next was hunting up native wild orchids which grow here in Limburg.  The Things were thrilled to find two varieties, a pale lilac orchid:

and a brighter fushia-purple one:

We admired the views from top of the plateau together, with the city of Maastricht in the distance:

Then it was time to head home, for our last meal together.  We made it a celebration and served up a traditional Dutch springtime supper: white asparagus and boiled potatoes with a creamy butter sauce, ham, boiled eggs, and applesauce.  The Things loved the "Dutch White Supper" as Boo & Little Toot call it.

All in all, it was a fun visit and a very pleasant distraction for me through the process of this last surgery.

The Things are now off on their next adventure, but you can continue to follow them along via the Ironic Mom website.  Het was een leuk tijd, Thing 1 en Thing 2; hartelijk bedankt en tot ziens!

Peculiar Intimacy

A few days ago I stood naked in a shower with a man I had met only 10 minutes before showing me how to properly use the sprayer to massage my abdominal region.  With his face inches from my belly button, he guided my hand in the appropriate circular motion and commented, "Feels very nice, doesn't it?"  Then he winked and gave me a big grin.  I could do nothing but agree; it did, indeed, feel very nice.

My husband was relieved when he heard about the encounter because it meant he wouldn't have to do it himself.

The man helping me, you see, was a nurse and the reason I needed help with the shower sprayer was to learn how to properly wash out my new surgical site, which was left open to heal rather than being stitched completely closed.  Rather like a drawstring bag pulled almost, but not quite, shut.  While the shower itself felt great, btw, weird doesn't begin to describe the physical sensation of hot water being sprayed into an open surgical wound onto a patch of one's small intestine.  It's like the sharpest pinprick and the softest touch you've ever experienced, happening simultaneously.

This being my ninth surgery in eight years it wasn't my first surgical wound or my first "this-should-be-really-uncomfortable-but-it's-not" moment.  A few weeks before, a very kind nurse knelt by my bed, leaned over my belly and gently blew excess powder away from my stoma -- the bit of small intestine cut open and sticking out through my abdominal wall to allow poop to be gathered in a bag rather than exiting in the typical mode.  Her mouth was mere centimeters from a poop volcano known to erupt violently at random moments, but her eyes showed only concern.  Her breath was cool, and soft.  I let out a sigh of relief and felt pain and fear recede.  It felt wonderful.  I wiggled my toes and stretched a little, delighting in that brief moment of release and freedom from ulcerated skin, adhesives, and plastic ostomy bags.

The Dutch have a great word for this pleasant sensual feeling: lekker.  Lekker can be translated as "yummy" and it is used to describe a variety of sensations.  It is not sexual in nature, although sex can be described as lekker.  So can a shower (lekker douchen) or a cup of coffee (lekker koffie) or the weather (lekker weer).  It's the best word I can think of to describe that first hot shower on a battered body two days after surgery, that comforting touch at a site of pain that lets one know it will all be okay in a bit.

Peculiar is the other word that comes to mind, because normally I don't allow strangers to see me naked or get close to orifices that may leak poop, let alone touch me in an exceedingly intimate manner.  I used to be really uptight about things like that; used to insist on curtains being closed in exam rooms and gowns being provided for medical tests.  I used to blush and bite my lip until it bled when medical students gathered around my bed, commanded me to pull my knees up to my chin, and poked around in my nether regions.  Not any more.  It's all too matter-of-course these days.  Now I just follow directions, close my eyes, think of England (!!!), and get on with business.

Except when one of those unexpected lekker moments happen; those I try to capture, to remember when I need something positive to think about.

Before I experienced major surgery I had spoken with people who described what it was like to be stretched out on the table, naked and cold and afraid.  One man told me that he remembered that Jesus had been like that on the cross, and it reminded him that he was not alone; it gave him some comfort.

I desperately tried to feel that myself the first time I was placed on that cold metal, but even though I pictured the crucifixion vividly in my mind, willing myself to believe that I was not alone in that awful place and position, all I felt was cold and terrified.  Then the anesthesiologist announced it was time to place the epidural.  Powerful hands gripped me, pulled me up, and turned me to the right while a calm voice explained how I needed to curve my back and place my head while the doctors worked.  I began to panic, a scream started to rise out of my stomach, and then strong arms enveloped me and held me close to a warm, clean-smelling, solid body.  The nurse held me like that for the entire procedure, softly telling me to breathe, breathe, in-out, in-out.  The panic left and I felt like a baby in someone's arms.

It was lekker.

Have you ever had an unexpected moment of lekker-ness in a peculiar place?